Disability Hits Home

It has been quite a long time since I shared a post. As we all know, life is full of surprises and not all of them are good ones. One of our life’s surprises was delivered to us two years ago when my husband sustained a neck injury and then, during surgery, sustained a spinal cord injury. A second surgery was required to relieve pressure from his spinal cord. The new neurosurgeon did everything he could to help and we are thankful beyond measure that he was able to relieve most of my husband’s pain. However, there are permanent residual effects, which include muscle weakness, nerve damage, and spinal headaches. We have made it through the worst part and we understand that the window of any possible neurological improvements has now closed. This journey has been like a roller coaster full of highs and lows. There have been moments of devastation, hope, disappointment, encouragement, and loss. Stages of the grief cycle continues to be visited but we do our best to get through the rough days and enjoy the good days. We hang out in the “acceptance” stage more often now, and we are comforted by our love for each other, our faith, and our support system.

Throughout this journey, I have been reminded of the parents I have worked with who have children with disabilities, especially those who are medically fragile. I have experienced a taste of what they must experience as a parent. Navigating the “system”, educating ourselves, advocacy, and seeking support have been the hardest yet most important. If I can offer some encouragement, it would be this:

Stay strong but also allow yourselves to experience moments of weakness.

Educate yourselves so that you know when you need to advocate for your and/or your child’s needs.

Seek support: no matter how strong you are, you need it. Supports can include not only a formal support group but also your family, friends, counseling, and agencies.

Take a little time for yourself and don’t feel guilty about it. You need time to energize your battery so that you can be at your best.

I hope that, perhaps, the sharing of our journey has offered some encouragement along yours. Be sure to check the “resources” tab at the top of the page for links to agencies and information you might find helpful.

I am a Sassy Southern Gal living in the Midwest. Come along on my journey and we'll share some stories and fun. You'll soon see why I am a SassySouthernGal! Disclaimer: “The content in this posting are my own personal opinions and not the opinions or policies of the National Down Syndrome Society”. !